Am I being paranoid?

I have idiopathic cirrhosis and have, in the past two weeks or so, realised that I have had a lot of hair loss and my skin has been fairly itchy as well. It is not as itchy as it was when I was previously hospitalized though. I have read that hair loss can be a symptom of cirrhosis and I have noticed at least a handful a day. I don't have any bald patches though. My previous bloods showed up that one of my enzymes is raised but my liver consultant didn't say which, she just asked if i could get them repeated. Is this something I should be worried about or am I just being paranoid?

18 Replies

  • Hi Jessica

    Do you know how advanced your cirrhosis is? ie was it diagnosed via a liver biopsy or by a combination of scans and blood tests.

    I've not heard of hair loss as being a symptom of cirrhosis, but in your case, as you don't know the cause of the cirrhosis it may be to do with the unknown cause.

    When you get the bloods repeated, ask if you can keep a copy of the results, that way you will be in the know regarding any that are out of range. I would recommend always getting a copy of any results - blood tests, scans whatever, as it helps you to keep informed about what is happening to your liver.

  • Hi Bolly. I have cirrhosis, and my hair falls out by the hand full, I'm not going to wash my bit of hair anymore, I have ordered a steam mop Ha!

  • Good luck with the mop, ha ha! Thanks for correcting me Ruby, I've been a member of another forum for 3 years and not seen anyone with cirrhosis on there posting about hair loss, though they do suffer thinning and loss if they are on medication to cure Hep C.

    Does you hair regrow in time, or is it getting thinner and thinner?

  • Hi, i don't think it is really advanced to be honest. It is well compensated as i dont have jaundice anymore and i dont have ascites or oedema. I just dont want to badger my liver consultant over something that might not even be related. Thank you.

  • If your liver consultant is half decent at her job, she should answer all your questions and not consider any of them 'badgering'. If you aren't due to see her for a while then email her via her secretary (any letter you have from the consultant should have contact details on them) and ask the question.

    Re the bloods. It sounds like you are having to organize this second set yourself? If so, make sure you get a copy of the results. Then you wont be left in the dark as to what is out of range.

    Do you have any other underlying health problems apart from the cirrhosis? Were you feeling poorly for a while before it was diagnosed, as cirrhosis doesn't happen overnight, it takes many months, even years for the liver to get to that stage.

    How was the cirrhosis diagnosed? I know some online websites list hair loss as a symptom of cirrhosis, but if you look at which list its in it tends to be a symptom of advanced liver disease, not early or mild. It sounds like you are borderline cirrhotic in which case I wouldn't have thought hair loss was a symptom. Stress, thyroid, low iron levels, hormones, etc can all trigger hair loss but when the cause is addressed the hair normally grows back. Is it thinning all over or just in a particular part of the scalp.

  • Yes, I normally organise my bloods the week before I am due to go and see my liver consultant. She is really good at her job, really sympathetic, especially because of my age, and we regularly keep in touch via private email. I do have asthma and possible Crohns disease as well. I had been throwing up constantly for at least a month before I was took to hospital with jaundice all over my body. I was really itchy and could barely eat anything, I was in pain with my stomach and I was constantly tired and had lost a lot of weight but while I was in the hospital I contracted e-coli. They done a number of tests due to me not being a drinker or drug user such as for gilberts syndrome and wilsons disease, which they expected at first due to my high iron levels on my liver, even though I was aneamic. They then took me for ultrasounds and MRI scans which showed that my whole liver was diseased and they they requested a biopsy. I had another biopsy about 6 months later and they all showed cirrhosis. The samples and my scans were all sent to the Freeman Hospital in Newcastle for extra guidance and they said the same. I am due to get a special kind of ultra sound in about a year which will determine how solid my liver is which will show them obviously how bad my cirrhosis is. I am currently fairly stressed due to University exams and I have just previously had a baby which nobody thought was possible, and I a also anaemic. I just didn't want to set to one side like I did before because my skin is also really itchy at the moment.

  • No, i don't think you are being paranoid. it could be related or not, so something or nothing. I think what i'd do in similar circumstances is try to see a GP this week, and get LFTs checked again. Your liver disease is 'idiopathic' but you have other AI conditions and this could be related as hair loss can be autoimmune. Obviously none of us can know what's what. but I think you should get it checked out.

  • Oh, have jst reread your last post. You say you have consultant's email - why not ask her then? I don't think she'd see it as 'paranoia'. You are a young woman with a serious - and rare -health condition, you ahve a newish symptom, you need to get it looked at, i think. Please do discuss with consultant.

  • Thank you all for your advice. I will speak to my consultant about it and get my bloods done as well. Hopefully all will be good. Really do not want to be back in the same position as before!

  • Wow Jessica, you have had a tough time. Its common for women to suffer hair loss during and after pregnancy for a short while, but it does normally regrow.

    You mention you were diagnosed with high iron levels on my liver while you blood tests showed you were anaemic. Did they diagnose you with Haemochromatosis which is a liver condition caused by an overload of iron being stored in the liver and your body being unable to rid itself of excess, hence the low levels in your blood but high levels in your liver. If left untreated it will progress to fibrosis and cirrhosis. Treatment is either by controlling the iron in your diet, or by phlebotomy which is taking blood. As all your test results were sent to one of the best liver centres in the UK I would guess the medics have worked out what your condition is and how best to treat it.

  • No they said I don't have haemochromatosis because I don't have the gene for it. I am the only one in my family to have Cirrhosis and by far the youngest in my family to have such a serious disease. Both the hospital that I regularly attend and the Freeman Hospital have said that it is Cirrhosis, they just don't know how it has been cause because I don't drink, smoke, or take drugs, and I have never had problems with being overweight. The only thing that I can think of myself is that it is a complication of the crohns disease. All of the tests they have done so far for that have indicated Crohns disease but when I was hospitalized for the Cirrhosis the halted any tests for it and decided to focus purely on my liver. So they have not yet come to a full decision regarding that either. All of this started because of anaemia! Because I had previously had anaemia through childhood due to an eating disorder my GP looked further into it and found I had a B12 deficiency and then from that all of my symptoms indicated Crohns. I spent the later years of my teenage life going to and from the hospital for various tests on my bowels and my liver! It has been such a nightmare.

  • The anaemia fits with the Crohns and with your earlier eating disorder, but not typically with liver disease. By the way, how has the excess iron in the liver been dealth with.

    The stomach pain and weight loss also fit with Crohns, but not always with liver disease. Have you been tested for Primary Sclerosing Cholangitis (PSC) overlap, as this affects about one in 25 people with Crohns and can cause inflammation of the bile ducts (hence the jaundice) and can eventually affect the liver.

  • They haven't treated the excess iron, they just monitored it to see how it was after I left the hospital. As they haven't yet come to a full diagnosis of Crohns, despite every test they have carried out so far indicating Crohn's, I don't think they have tested for that.

  • I think B12 deficiency can also cause problems with hair and skin. Really best to discuss with professionals who know your history. Like Bolly, i was thinking as you've had a baby recently that could explain it too. Also you are more likely to have thyroid problems if you already have things like B12 deficiency and Crohn's etc. And some meds increase risk fo hair loss too. With 'postnatal hair loss' it is in fact loss of excess hair which grows, as a normal process during pregnancy, and then over next 6-12 months returns to normal.This gives the appearance of hair being lost (which of course it is!) but is actually just returning to normal. Though for some women it is excessive and kind of patchy. fascinating stuff. IMO!! Hope you get answers and get it all sorted out, jessica.

  • Thank you very much for you contribution :) I think I will see how it goes and if it is still falling out a lot by the time I have my bloods done next week, when I email my consultant for the results I will ask her about it. Kind regards!

  • I experienced hair loss with my cirrhosis, but I only after jaundice and extreme pruritus and liver failure. However I do think it can be related. Wait for that repeat of the bloods and see what your doc says :)

  • Has your hair grown back at all, the same is happening to me, have jaundice and cirrhosis was told it was because of large GI bleed in Feb 2013 which led to anemia which Was 3 months ago, hope all is well with you. Angse

  • Thank you :)! Hope everything is ok now.

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